R&R

Tomorrow, I will get in my minivan, crank up some music and head to Columbus, Mississippi. There, I will meet up with my long time best friend, Teresa, and we will tour antebellum homes, eat, sit in the hot tub, and sleep as late as we want to for three glorious days and nights. 


Teresa has been my friend for so long that most of the time, words need not even be exchanged. We can convey volumes with just a look or a gesture. And we have a tendency to burst into song at the drop of a hat. 


Coming off of a summer of illness and crisis for me and loved ones, I need this break desperately. I am letting other family members handle things for a few days. I have to rest and recharge my body, my mind, and my spirit. I can't afford not to. 

iPhone 4s

On Friday, Oct. 14th, I did something I never thought I would do. I drove to the Apple Store in Jackson to get in line for the newest incarnation of the iPhone on the actual day it came out. I skipped the "4" altogether. I can't afford to upgrade every time a new iPhone comes out. But the timing of this was perfect. Two days after my birthday, with birthday money in hand, I decided to go for the 4s. 


When I got to the store, the first wave of customers had already come and gone. The store was full, but I was ushered in and quickly set up with a white, 32 gig model. As I exited the store, clutching my new toy, a reporter from "The Clarion Ledger" asked for an interview that would be quoted in the next days business section. How cool was that? 


I am actually not one who has to have the latest or most expensive gadget. I saved my money for almost a year and waited until the second iPad came out before I bit. What a difference being able to read on that thing has made in my life! My iMac was another thing that I did not buy until my old PC crashed and burned. A Mac just happened to suit my particular computer needs better than a PC by then. I did not get an iPhone until the 3Gs came out. 


So far, I love my 4s! It is much faster than the 3Gs. The battery life is longer. It has more capacity than my former phone so I can load more of my music and my e-books on it. And it has "Siri", that voice activated personal assistant that is getting so much attention. I have to admit, I am loving this feature! Today I was able to find a friend the name of an Italian restaurant in Clinton, create a reminder to pick up my medicine, and find all the United Methodist churches in Warren County. Pretty cool!


Over the past month, life has changed rather drastically. Not just for me, but for several loved ones. I foresee a fair amount of sitting in doctors office waiting rooms and hospitals. Being able to read, listen to music, check my email, Facebook, and text easily makes a huge difference and may just save my sanity. (If I ever had any. That is debatable!) 


Thanks again, Apple. 

Wireless

Last week, I purchased an early birthday gift, to me, from me. Sony wireless headphones from newegg.com. 


These headphones including shipping were slightly less than $40.00. I can already tell that this is some of the best money I have ever spent. They work quite well, the sound quality is pretty nice for the price, and best of all, I can watch TV and movies freely without worrying about disturbing my husband who is often in bed by 9PM.


Before my headphones, I would try to watch TV in our small home, but always cringed when a noisy commercial came on before I could find the mute button. I love to read, but by evening, my vision is too blurred to do much of that. Depending on vision and hand stiffness, painting is often out by late evening. So, I depend on the "boob tube" to keep me company when I am up till 1 and 2 AM. I can DVR and watch all the stuff my husband is not fond of like "Dancing With the Stars", "Say Yes to the Dress", "Project Runway", and "America's Got Talent." Hey, I need my doses of mindless TV every now and then. And I have to have my periodic Anderson Cooper and Piers Morgan fixes as well. 


A new "Coach" store is opening in our outlet mall today. I couldn't care less. Forget fancy purses and shoes. Forget fine jewelry. 


For me, it is all about electronics. 


Call me "Gadget Girl".

The Age of Cancer

Over the past couple of weeks, several friends and loved ones of mine have been either diagnosed with cancer or that their cancer has returned. Coincidentally, all of these folks have been over the age of 70. But, they also are people who have, up until now, been active and independent. None of them have any problems with dementia. None of them were down physically, other than with some normal things that happen with age, such as osteoarthritis. Shoot, most of them can run circles around me!


So why, when sharing news and asking for prayers, has age come up as the primary issue? In these days of better health care, increased awareness, and prevention, 80 is really no longer what I personally call "old." My church has several members over the age of 90 who still live independently, drive their cars (safely, I might add!) and take care of their friends and families. 


I feel the same way about the cancer diagnoses of my 70+ friends and loved ones as I do when I hear of a loved one 30 years younger being diagnosed. It may be a harder fight, but, depending on the individual, that fight can still be worth it. 


And it can be won. 

Attack of the Superwomen

I am not Superwoman. I admit, there was a time when I wanted to be. I was going to be the one who could do it all. And not just do it all, but with style, grace, and ease. 


Chronic illness helped knock the desire to be Superwoman out of me. I began to realize how much of my identity was tied up with "doing." It took a while for me to be at peace with just "being".  Of course, I still "do." But, I don't have to do things better than anyone else. I don't have to do "more." 


This peace has been tested this week. I have been in a situation where I have had to sit back on my little red scooter and watch others "do it all".  My relatively small offerings have been minimized and eclipsed. I just have to hope that my efforts have made some differences where it really counts and to not worry about the scope of them. 


Can I "not" do it all with style and grace? Stay tuned.

The Verdict

After being in pain for most of the summer and being poked and prodded for a month, the verdict is costochondritis. This is severe inflammation of the cartilage that connects the ribs to the sternum. 


http://www.mayoclinic.com/health/costochondritis/DS00626


According to my neuromuscular doc, this condition is fairly common in people who have multiple autoimmune diseases. That includes me. 


Getting my heart, stomach, and gallbladder checked out were, according to my doc, the appropriate things to do, given my family history and age. But, in the end, it was benign, but painful, inflammation that was the trouble. 


I feel like I "lost" my summer, between being in too much pain to function well and being in hospitals and doctor's offices. But, the upside is that, after 2 1/2 months, I am finally feeling human again. 


Just in time for Fall. 

Frustration

One of the most frustrating things about being disabled is inability to guarantee someone that I will be completely and totally reliable. When I was healthy, I always took great pride in being dependable. And even sick, if a crisis occurred, I was going to find someone to cover for me or at the very least call (sometimes removing my oxygen mask in an ER, much to the consternation of the medical staff) to let someone know that I would not make an appointment. 

I know that people in charge of things have to make sure that things are covered. But I get discouraged when tasks and opportunities are taken from me "just in case." I try very hard to pace myself and do the best I possibly can to make sure I can meet the things I commit to. I may not get things done quite as fast as a "non disabled" person. But, I daresay, I fulfill my obligations better than a lot of healthy people I know! 

Believe me. I will be the first person to take myself out of the game if I cannot perform a duty well and in a timely manner. 

Don't dwell on my disabilities. Dwell on my abilities. 

The "Box"

A year ago today, I took a gamble and became part of a new gift and consignment shop called "The Cricket Box." Little did I know what a blessing I was in for!

I am now selling enough art to keep myself in supplies, donate to charity, and make a bit of profit. People tell me that looking at my "wall" makes them smile. This is all I could ask for.

Forming relationships with other vendors has also been a wonderful experience. Most of us help each other out whether it is hammering a nail that is *just* out of reach or helping someone create a Facebook page. If a friend or acquaintance is looking for something, we direct them to our fellow vendors at the "Box."

But, by far, the biggest blessing has been getting to know the owners of this amazing operation, Debbie Tate and Judy Wooley. They have not only managed to start a business (yes, in THIS economy!), but they  manage their business with grace. And they always have a smile and an encouraging word for us vendors. They make it a pleasant place just to "be."

A year ago, I took a $100.00 gamble on myself.

And won.

A Proper Funeral

Yesterday, I was privileged to attend the funeral service for a longtime family friend, Miss Jean.

It was a very proper service, the likes of which I had not seen in some time. Almost everyone was dressed in "Sunday best" attire which to me is a sign of respect for the church in which the service is held as well as for the deceased.

The choir that Miss Jean had accompanied sang favorite old hymns in voices that quavered a bit at times. Pallbearers marched in wearing dark suits and white gloves. Large white carnations, which would later be placed on the casket, adorned their lapels.

One of Jean's friends stood and shared stories about her. The pastor, a wonderfully upbeat fellow, did his best to make the service a celebration of Jean's life and focused on her "new" pain and struggle-free life with Jesus.

After the service, the pall bearers marched out behind the casket and after it was put in the hearse, stood still and faced the bereaved as they exited the church.

I did not stay for the repast after the service. However, I could tell that there was going to be quite a feast for Jean's friends and family when they returned from the graveside where she was laid to rest beside her husband.

Music, flowers, laughter, tears, and fellowship. I think Miss Jean would have approved.

Rest in peace sweet lady.

Hurricane Party

As I was watching coverage of Hurricane Irene, this video came on CNN. Rather than submit to the uncertainties of shelter life, these feisty senior citizens chose to ride out the hurricane in their retirement apartment building.

I can't say that I blame them. As they pointed out, some of them had serious medical conditions that would make trying to sleep on cots difficult to impossible. And what about their medical equipment, special diets, etc?

It made me think about what I would do if faced with that choice. I might get down on one of those shelter cots. But it would take several people to get me UP. And if they had to do that every time I had to go to the bathroom, it would be a full time job!

Would I be able to hook up my biPap? I stop breathing at least once every minute and a half to two minutes without it and wake up in a total fog and with a terrible headache.

And would my medicines be safe? I take too many to carry around in my purse all the time. Especially if they were all in bottles. Not to mention epi-pens, inhalers, my nebulizer, my walker and my scooter. I am seriously high maintenance!

I have to admit, I would probably take my cue from those seniors and stay home.

And pray. A lot.

A Grace Moment

Tonight I had what I call a "grace moment." One of those times when, unexpectedly, a burden is lifted. A dreaded task does not have to be performed. A day does not have to be completely juggled and reconfigured.

I would have performed this task with all of the grace I could muster. But, I was concerned about how my body was going to hold up in the heat that is expected tomorrow. Not knowing how far I might have to walk and what assistive device I would need. Whether the chest pains that leave me slightly lightheaded and short of breath would plague me at an inopportune time. Sometimes, even with my limitations, I am "it." 

But now I can go to bed, hopefully to sleep. 

And say a prayer of thanksgiving for my "grace moment." 

Sapped

 

I have been in "extra" pain for almost 7 weeks now. I am in the process of being poked, prodded, and tested to find the source of the unrelenting chest pain. My heart has pretty much been cleared. This is good. But, I am still hurting.

I am no stranger to pain. I have been in varying degrees of discomfort/pain since I fractured my back in a bus crash at age 18 . I also have scoliosis and other back and neck issues. Chiropractic care helps me keep the pain at a manageable level for the most part. I take only an occasional OTC Aleve or Tylenol. 

But being at this level of pain is affecting both my energy and my creativity. My mind is so occupied with "keeping going" that I don't seem to have the energy left to be truly creative. And this lack of creativity is wearing on my spirit. 

I am sapped. 

CAPTCHA

This is the name of those codes that one must type in so that a site can make sure responses are generated by a real person. For most people, these are not hard to figure out and type in. 

But for someone like myself, who deals with bouts of double vision due to the the neuromuscular disease, myasthenia gravis, it can be impossible to read and reproduce these codes. Many of them contain letters that are slightly doubled to begin with. That means I see FOUR of the characters. Even when I greatly increase the size of the text, which I do for almost all webpages, I still can't figure them out. This affects my ability to do things ranging from commenting on a blog post, to making an online purchase. 

And yes, I have tried to use the audio version of these CAPTCHA codes. I have yet to be able to understand one of them. That robotic voice is as indecipherable to my ears as the letters are to my eyes!

There has to be a better way. 

Really.

Courtesy

Most of us were brought up to be courteous to friends, acquaintances, and even strangers. But how many of us extend this courtesy to the people who should count the most...our families.

I try very hard to do this. I say please and thank you. I return things I borrow. I take my turn and try to pull my weight as much as I am able. I return phone calls and text messages. I think my family deserves this as much as anyone else. I don't always succeed, but I do try.

Is it too much to ask for that same courtesy in return?

Jobs

Lately, it seems like every time I turn on the TV, I hear the word "jobs." As in shortage of them. I do not doubt that more jobs are needed.

But, sometimes I have to wonder about the people who are looking for jobs as well. I see people in doctors offices, restaurants, stores, and other businesses who say they are there to fill out a job application or have an interview. One young man came to fill out a job application without even bringing a pen! I loaned him one, but I could tell that he was not prepared to make a good impression. His pants were "sagging" and his shirt was stained. He looked like a nice young man, but I would not hire him. Dress as if the job is already yours.

And then there are the people who say they are trying to find work, but no effort is made to really look. When one is looking for a job, one needs to MAKE that his or her job. It takes time, patience, and persistence. When I was looking for work in college, I went into to stores even if they did not indicate they were hiring. More than once, I was able to persuade these folks to hire me.

And it is true that one is more likely to find a better job when one is already employed. Do something! An elderly friend of mine went for an interview with the highway department. He was told he was not qualified for the position. He replied "How much skill does it take to cut a bush?" This told his prospective employers that he was willing to start at the bottom and work his way up. He got the job.

Is the job you get going to be your dream job? Maybe not. But it can be a foot in the door. And don't be afraid to try something new. Who knows? It might be the start of something big!

Project Runway

The new season has begun and most of these designers are fabulous!

And yes, I have already picked my favorite.  Bert Keeter won the challenge today, but I liked him from what I saw of him on the audition special before the season premiere. He was open and honest about what losing his partner and best friends to AIDS did to him. How he turned to alcohol to deal with his feelings and how he has worked to stay sober.

I was surprised at the pain his story brought up for me. I lost a number of friends to AIDS back in the 90's. Just as painful as the losses were the hateful and judgmental attitudes shown towards my friends, and towards me for supporting them. There were times when I was almost ashamed to call myself a Christian. I couldn't picture Jesus saying the things I heard from people who claimed to follow Him.

But, back to the present. Bert's winning design, made from orange checked boxer shorts and a bedsheet was spectacular. I hope he stays sober, finds love again, and wins Project Runway.

Heart to Heart

As my Monday afternoon cardiology appointment draws near, I find myself getting a bit anxious. Not panicky, just a bit unsettled.

I don't know which is worse. Being afraid that it *is* my heart, or being embarrassed if it turns out to be a very expensive case of indigestion. I know I will feel better when I know one way or another. I have just been dismissed and ridiculed before concerning my (very real) health issues and the scars remain. And although people mean well when they say "don't worry", "put it in GOD'S hands" (imagine the stentorian tones here), or "it will be all right", it does more harm than good. Sometimes I need to hear "It's OK to be scared."

But, having buried my mother, grandfather, and an aunt all at age 57 of heart disease, I suppose I would rather be safe than sorry.

30 Day Song Challenge (Finally) Continued

Somewhere on the way to finishing blogging about my 30 day song challenge, I got lost in a sea of the stuff of life. But, finally, I have a breather, so without further ado...

Day 16: A good song that does get a little repetitive: Two out of Three Aint Bad Meatloaf 1977

Day 17: A song from your childhood: "Goin’ to the Chapel The Dixie Cups 1964." I actually had the 45 to this. I was only 5, but I sang this tune constantly. I can still remember all the words.

Day 18: The Greatest Guitar Work you have ever heard: Smooth Santana/Rob Thomas 1999. People may argue this one with me, but this song makes me want to dance! Even with my two left feet. :)

Day 19: An Exceptionally Sad Song "My Immortal" Evanescence 2003. Sad, but beautifully sung by Amy Lee. 

Day 20: A song by an artist no longer living: "Fields of Gold" Eva Cassidy 1993/1996. The early death of Eva Cassidy was a tragedy for the world of music. Fortunately, she left us a legacy of wonderful tunes like this cover of Sting's FOG. I first heard this version when Michelle Kwan skated to it, and instantly fell in love. 

Day 21: A song with a great bass rhythm: Under Pressure Queen 1981. Queen is and remains one of my favorite all time bands. 

Day 22: A song you can deeply relate to: "The World I Know" Collective Soul. 1995. The "Bird" video. Need I say more?

Day 23: A song you can play over and over and not get sick of: "Iris" Goo Goo Dolls 1998. This song was on the "City of Angels" soundtrack. One of my favorite songs and soundtracks ever. 

Day 24: A song played at a memorable event in your life: "Colour My World Chicago 1970." My band director sang this at a bandcamp dance. It was my first time to be away from home for an entire week and the first time I was really noticed by BOYS. 

Day 25: A song you don’t understand: "Winter" Tori Amos 1992. Yet another song skated to by my all time favorite skater, Michelle Kwan. Tori Amos is somewhat cryptic to say the least, but the song is lovely.

Day 26: The Best Rock Song You’ve Ever Heard: "Livin’ on a Prayer" Bon Jovi 1986. This was a toughie, but I finally had to give a nod to the amazingly gorgeous Jon Bon Jovi. 

Day 27: A song that forces you to reminisce: "Hopelessly Devoted to You" Olivia Newton John 1978. 'Grease' came out the summer between my freshman and sophomore years of college. It stayed at our little movie house all summer and my boyfriend at the time and I saw it so many times I lost count. 

Day 28: A Song that gives you shivers: "Who Wants to Live Forever" Queen 1986. Eerily foreshadowing of the untimely death of Freddie Mercury. This song also reminds me of the many friends I lost to AIDS. 

Day 29: A Song that Helps You Live: "With a Little Help from my Friends" Joe Cocker 1967. What would I do without them?

Day 30: My Favorite Song: "Mad World" Adam Lambert 2009. I don't know exactly why this song touches me like it does, but since I heard it performed on American Idol, it has been my favorite "popular" song. Sometimes it really is quite a "mad world." Yet, we prevail. 

Betty Ford

I think the title of my blog sums up her style quite well! I can remember when people did not say the word " cancer" out loud. People would whisper that someone had "c."

And getting treatment for alcoholism, at least in the South, would have been covered up or shrouded in secrecy. I never knew my own grandfather had been in treatment back in the fifties until after my grandmothers death less than ten years ago.

God bless Betty Ford. May she rest in peace.

And thanks for saying it out loud.

Weary

After two days of more than usual activity, I woke up this morning already weary. But, it is more than the physical tiredness. I am weary to the soul. So many of my friends and family are going through tough times. My nature is such that I "go through" these times with them on both physical and emotional levels. And 99% of the time, I would not have it any other way.

I have a list of people I need to call and check on and things I need to do. But today I am having trouble mustering up the energy to do any of these things. I am so exhausted that a just getting in the shower seems to be a Herculean task.

This is a time when I am going to have to disengage for just a bit, find some ways to refresh and renew my own strength, and get some rest.

I just have to do it.